Guide to HIV, pregnancy & women’s health

Guide to HIV,
pregnancy &
women’s health
HIV i-Base
ISSN 1475-0740
www.i-Base.info
Watch for out-of-date information
Diagnosed with HIV in pregnancy
How HIV is transmitted to a baby
Mothers’ health
Having an HIV negative baby
HIV, pregnancy & women’s health
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Contents
Introduction 4
Background and general questions
6
Protecting and ensuring the mother’s health
14
How HIV is transmitted to a baby
Planning your pregnancy
15
18
HIV care and treatment during pregnancy 26
Screening and monitoring33
Prevention and treatment of other infections
34
Delivering your baby
36
HIV drugs and the baby’s health
After the baby is born
39
41
Feeding your baby42
Support pages
Feedback
i-Base publications order form
2
47
54
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This booklet is about HIV and pregnancy.
It explains what to do if you are diagnosed
with HIV in pregnancy. It also explains
what to do if you already know you are
HIV positive and decide to have a baby.
The booklet includes information about
mothers’ health, using antiretrovirals
during pregnancy and the babies’ health.
It includes information on how to have an
HIV negative baby if you are HIV positive.
It also includes information about safe
conception for couples where one partner
is positive and one is negative.
The guide was written and compiled by Polly
Clayden for HIV i-Base. Thanks to the advisory
board of HIV positive people, activists and
health care professionals for comments and
the people who shared their stories. Particular
thanks to Angelina Namibia and Memory
Sachikonye.
March 2013
Funded by The Monument Trust.
Artwork copyright Keith Haring Studio.
Disclaimer: Information in this booklet is not
intended to replace information from your
doctor. Treatment decisions should always be
taken in consultation with your doctor.
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Introduction
This is the 6th edition of the i-Base
pregnancy guide.
Since our last edition, the British HIV
Association (BHIVA) guidelines have
been updated and research findings
have been reported. These include:
• An updated section on safe
conception for couples where one
partner is HIV negative and one
is HIV positive. This has more
emphasis on safe conception
using antiretroviral therapy. It
also discusses the reduced risk
of HIV transmission between
partners. So although most of
the information included in the
booklet is for HIV positive women,
this section is also relevant to HIV
negative women with HIV positive
men.
• A stronger emphasis on starting
treatment early enough in
pregnancy to ensure your viral
load is undetectable at delivery.
• More detailed information on
using antiretrovirals in different
pregnancy scenarios including
coinfection with hepatitis B and C.
• The recommendation that mothers
on antiretroviral therapy with
an undetectable viral load and
no other complications deliver
vaginally.
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• Continuing antiretroviral therapy
after delivery for women not
indicated for treatment for their
own HIV is addressed for the first
time.
• A continued strong
recommendation on the
importance of complete avoidance
of breast feeding despite new
research relevant to countries
where this is not possible.
The excellent news is, with good
management focusing on a woman’s
health and choice, there is little risk
of transmission to her child for an HIV
positive mother delivering in the UK
today.
Our most recent reports show a 1 in
1,000 transmission rate for women
receiving combination antiretroviral
therapy (ART) with an undetectable
viral load of less than 50 copies/mL,
whether she has a planned vaginal or
planned Caesarean delivery.
This is the lowest transmission rate
reported and represents a significant
advance in the information available
to women planning a family or
already pregnant.
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We explain what all these terms and
options mean and when they are
appropriate.
Excellent news too is that people with
HIV are living longer and healthier
lives so an HIV positive mother in
the UK today can also expect to be
around to watch her child grow up!
British HIV Association (BHIVA) and
Children’s HIV Association (CHIVA)
Guidelines for the Management of
HIV Infection in Pregnant Women
2012 are online at:
http://www.bhiva.org/documents/
Guidelines/Pregnancy/2012/
hiv1030_6.pdf
British HIV Association, BASHH and
FSRH guidelines for the management
of the sexual and reproductive health
of people living with HIV infection
2008 are online at:
http://www.bhiva.org/documents/
Guidelines/Sexual%20health/Sexualreproductive-health.pdf
March 2013
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Background and general questions
This booklet aims to help you get the
most out of your own treatment and
care if you are considering pregnancy
or during your pregnancy.
We hope that the information here
will be useful at all stages – before,
during and after pregnancy. It
should help whether you are already
on treatment or not. It includes
information for your own health and
the health of your baby.
If you have just been diagnosed
with HIV
You may be reading this guide at a
very confusing and hard time in your
life. Finding out either that you are
pregnant or that you are HIV positive
can be overwhelming on its own. It
can be even more difficult if you find
out about both at the same time.
Both pregnancy and HIV care involve
many new words and terms. We try
our best to be clear about what these
terms mean and how they might
affect your life.
On an optimistic note, it is likely that
no matter how difficult things seem
now, they will get better and easier.
It is very important and reassuring to
understand the great progress made
in treating HIV. This is especially true
for treatment in pregnancy.
receive from these sources and
others may be different to that given
to pregnant women generally. This
includes information on medication,
Caesarean section (C-section) and
breastfeeding.
Most people with HIV have some
time to come to terms with their
diagnosis before deciding about
treatment. This may not be the case
if you were diagnosed during your
pregnancy. You may need to make
some decisions more quickly.
Whatever you decide to do, make
sure that you understand the advice
you receive. Here are some tips if
you are confused or concerned as
you consider your options:
• Ask lots of questions.
• Take your partner or a friend with
you to your appointments.
• Try to talk to other women who
have been in your situation.
The decisions that you make about
your pregnancy are very personal. Having as much information as
possible will help you make informed
choices. You can only make these
decisions after learning all you can
about HIV and pregnancy, and with
your healthcare team.
There are lots of people, services
and other source of information
to help you. The advice that you
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I was diagnosed via antenatal testing when I
was three months pregnant. What a time to
receive bad news! I had a lot to think about
and at the same time start treatment straight
away.
The support I got from my group was
invaluable in helping me appreciate the
treatment and take it as prescribed. The
thought of having a healthy baby made me
determined to follow everything in detail.
I had a bouncing HIV negative baby boy
thanks to ART.
After he was born I stopped my medication,
on my doctors recommendation, as I did
not need it for myself. My CD4 is quite good
(above 600) and I had an undetectable viral
load at the time of my baby’s delivery.
Jo, London
March 2013
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Can HIV positive women become
mothers?
How is HIV transmitted to a baby?
Yes, and HIV treatment makes this
much safer.
Women around the world have safely
used antiretroviral drugs in pregnancy
now for almost 20 years. Currently
this usually involves taking at least
three antiretroviral drugs, which is
called combination therapy, ART or
HAART.
Antiretrovirals have completely
changed the lives of people with HIV
in every country where they are used.
Treatment has had an enormous
effect on the health of HIV positive
mothers and their children. It has
encouraged many women to think
about having children (or having
children again).
Your HIV treatment will protect
your baby
The benefits of treatment are not just
to your own health. Treating your
own HIV will reduce the risk of your
baby becoming HIV positive to almost
zero.
Without treatment, about 25 percent
of babies born to HIV positive women
will be born HIV positive. One in four
is not good odds, though, especially
because modern HIV treatment
can almost completely prevent
transmission.
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The exact way that transmission
(when the virus passes from one
person to another) from mother
to baby happens is still unknown.
Mother to baby transmission is known
as vertical transmission. The majority
of vertical transmissions happen
near the time of, or during, labour
and delivery (when the baby is being
born). Vertical transmission can also
occur through breastfeeding.
Certain risk factors seem to make
transmission much more likely. The
biggest of these is the mother’s viral
load, which means the amount of
virus in your blood.
As with treatment for anyone with
HIV, one important goal is to reach
an undetectable viral load. Viral load
tests measure the amount of virus
in your blood. The measurements
are in copies per millilitre (copies/
mL). Undetectable viral load is
currently considered to be below 50
copies/mL. When we talk about an
undetectable viral load in this guide,
that is what we mean. If a mother’s
viral load is undetectable when her
baby is born, the risk of vertical
transmission is almost zero.
This is particularly important at the
time of delivery. Other risk factors
include premature birth and lack of
prenatal HIV care.
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I’ve often said that having an HIV diagnosis
does not change who you are. Like many young
women I had always wanted to be a mother. In
some way, having a positive diagnosis made me
think about it even more.
I had my baby five years after I was diagnosed.
That was way back in 1998. I guess I was lucky
in a lot of ways because by the time I made the
decision to have a baby I’d had a lot of peer
support, information and met a lot of other HIV
positive women, who also had either been
diagnosed antenatally, or had children after their
diagnosis.
One of the most difficult things during and
after my pregnancy was the uncertainty about
whether - even taking up all the interventions
that were available to me – my baby would be
born HIV negative.
I cannot describe my feelings when I finally got
the all clear for my beautiful baby. All the worry,
fear and uncertainty were definitely worth the
wait!
Angelina, London
March 2013
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Practically all risk factors point to one
thing: looking after mother’s health.
Is it really safe to take HIV
medicines during pregnancy?
Some key points to remember:
The mother’s health directly relates to
the HIV status of the baby.
Whether the baby’s father is HIV
positive will not affect whether the
baby is born HIV positive.
The HIV status of your new baby
does not relate to the status of your
other children.
Are pregnant women automatically
offered HIV testing ?
It is now recommended in many parts
of the world. In the UK, healthcare
providers have been required since
1999 to offer and recommend that all
pregnant women have an HIV test.
This is now part of routine prenatal
care.
It is important for a woman to take an
HIV test when she is pregnant. Her
ability to look after her own treatment,
health and well being is improved
when she knows if she has HIV or
not.
This knowledge also means that, if
she tests positive, she can be aware
of how she can protect her baby from
HIV.
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Reducing the risk of a baby becoming
HIV positive was an early benefit of
antiretrovirals. Although, pregnant
women are often advised against
taking medications, this is not
the case with HIV treatment. This
difference can sometimes seem
confusing.
No one can tell you that it is
completely safe to use antiretrovirals
while you are pregnant but thousands
of women have taken these
medicines all over the world without
any complications to their baby. This
has resulted in many healthy HIV
negative babies.
During your prenatal discussions,
you and your doctor will discuss
the benefits and risks of treatment
options for you and your baby.
Your healthcare team also has
access to an international birth
defect registry. This has tracked
birth defects in babies exposed to
antiretroviral drugs since 1989.
http://www.apregistry.com
So far, the registry has not seen an
increase in the type or rate of birth
defects, in babies whose mothers
have been treated with currently
used antiretrovirals, compared to the
babies born to mums not using these
drugs.
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When most of everything felt right,
my health and relationship, having a
baby, after more than 20 years since
my last child, was the best feeling.
After discussions with my partner
and my doctor, I decided to have a
baby. We did this while continuing
with my current meds and of course
not breastfeeding.
I was determined to do everything in
my power to have an HIV negative
baby. Combination therapy has
fulfilled my dreams of becoming a
mother again.
Jenny, London
March 2013
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Will being pregnant make my HIV
worse?
women need the same treatment
to treat and prevent opportunistic
infections as people who are not
pregnant.
Pregnancy does not make a woman’s
HIV get any worse.
However, being pregnant may cause
a drop in your CD4 count. CD4 cells
are a type of white blood cell that
helps our bodies fight infection. They
are the cells that HIV infects and
uses to make copies of itself. Your
CD4 count is the number of CD4 cells
in one cubic millimetre (written cells/
mm3 but in this guide we will just use
the number eg 350) of blood. CD4
counts vary but an HIV negative adult
would expect to have a CD4 count in
the range of 400 to 1,600. Nearly all
HIV treatment guidelines recommend
starting treatment at 350 (and earlier
in some cases).
The CD4 drop in pregnancy is usually
about 50 cells/mm3, but it can vary a
lot. This drop is only temporary. Your
CD4 count will generally return to
your pre-pregnancy level soon after
the baby is born.
The drop should be a concern if
your CD4 falls below 200. Below this
level, you are at a higher risk from
opportunistic infections. These are
infections that occur after HIV has
damaged your immune system.
These infections could affect both
you and the baby, and you will need
to be treated for them immediately
if you get one. In general, pregnant
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Also sometimes if you start taking
ART in pregnancy your CD4 count
many not increase very much even
though your viral load goes down. If
this happens don’t worry, your CD4
count will catch up after the baby is
born.
HIV does not affect the course
of pregnancy in women who are
receiving ART.
The virus also does not affect the
health of the baby during pregnancy,
unless the mother develops an
opportunistic infection.
Additional info
This booklet is about HIV and
pregnancy. Other important aspects
of HIV treatment and care are
described in detail in other i-Base
guides, including:
• Introduction to Combination Therapy
• Guide to Changing Treatment
• HIV and your Quality of Life
• Hepatitis C for People Living with HIV
• Sexual Transmission and HIV Tests
These free booklets provide
additional information on the basics
of using and getting the best out of
your treatment. They also explain
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in more detail words and phrases
introduced in this one that may be
unfamiliar or confusing, including
CD4, viral load and resistance.
and information.
We hope that you will use all of these
booklets together when you need
them. Your clinic may have copies of
any or all of them. You can also order
them online:
http://www.i-base.info
Information service
i-Base provides a specialised HIV
information service.
Good sources of community support:
From Pregnancy to Baby and Beyond
peer support project at Positively UK.
Women (and men) can either self
refer or be referred by their clinic.
http://www.positivelyuk.org/
pregnancy_and_beyond.php
[email protected] or
02077130444
Body and Soul - a family HIV charity.
http://bodyandsoulcharity.org/contact/
It is online at:
http://i-base.info/qa/ask-aquestion?first=yes
or by email at [email protected]
uk
Frequently asked questions about
HIV and pregnancy are online at:
http://i-base.info/qa/faqs-on-havinga-baby
There is also a free telephone
information support service at the
following number: 0808 800 6013.
The service is available from 12
to 4 pm on Monday, Tuesday and
Wednesday.
If you want to ask questions about
HIV treatment and pregnancy, please
contact us and we will try to help.
Please also talk to your health care
team if you need additional support
March 2013
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Protecting and ensuring
the mother’s health
Your child is certainly going to want
you to be well and healthy as he
or she grows up. And you will want
to be able to watch him or her go
to school and become an adult. A
healthy mother is vital for the health
of a child.
Your own health and your own
treatment are the most important
things to consider for ensuring a
healthy baby.
This cannot be stressed enough.
Sometimes medical research can
forget the fact that HIV positive
pregnant women are people who
need care for their own HIV.
This can sometimes be neglected or
forgotten by mothers and healthcare
workers when the baby’s health is
the main focus. You should not forget
this. Your health and care are very
important.
Overall, your treatment should be
largely the same as if you were not
pregnant.
Prevention of transmission and the
health of your baby have a direct link
to your own care.
Prenatal counselling for HIV positive
woman should always include:
• Advice and discussion about how
to prevent vertical transmission
• Information about treating the
mother’s own HIV now.
• Information about treating the
mother’s HIV in the future.
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Principles of care
• A mother should be able to make
informed choices about how to
manage her pregnancy.
• She should be able to choose her
treatment during the pregnancy.
• Healthcare workers should
provide information, education
and counselling that is impartial,
supportive and non-judgemental.
• HIV should be intensively
monitored during pregnancy. This
is particularly important as the
time of delivery approaches.
• Opportunistic infections should be
treated appropriately.
• Antiretroviral drugs should be
used to reduce viral load to
undetectable levels.
• Mothers should be treated in
the best way to protect them
from developing resistance to
antiretroviral drugs.
• Mothers should be able to make
informed choices regarding how
and when their babies will be
born.
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Regardless of pregnancy, women should receive
optimal treatment for their HIV status
How HIV is transmitted
to a baby
How and why does transmission
happen?
Despite remarkable achievements in
reducing vertical transmission, we do
not fully understand how it happens.
What we do understand, though, is
that there are many factors that affect
transmission.
Of these, the level of the mother’s
viral load is the most important.
Vertical transmission of HIV can
happen before, during or after
birth. Scientists have found several
possible reasons for infection.
Besides the mother’s viral load, her
low CD4 count and whether she has
other infections can make it more
likely.
The exposure of the baby to a
mother’s infected blood or other body
fluids during pregnancy and delivery,
as well as breastfeeding, are thought
to be how transmission happens.
Most transmissions happen during
delivery when the baby is being born.
More rarely, some transmissions
happen during pregnancy before
delivery. This is called in utero
transmission.
This section has lots of medical
words. We have explained them on
page 16.
March 2013
Transmission during pregnancy (in
utero)
This may happen if the placenta
is damaged, making it possible for
HIV-infected blood from the mother to
transfer into the blood circulation of
the foetus.
Chorioamnionitis, for example, has
been associated with damage to the
placenta and increased transmission
risk of HIV.
This is thought to happen either by
infected cells travelling across the
placenta, or by progressive infection
of different layers of the placenta until
the virus reaches the foetoplacental
circulation.
The reason we know that in utero
transmission happens is that a
proportion of HIV positive babies
tested when they are a few days old
already have detectable virus in their
blood. Usually it takes several weeks
from when someone is infected until
HIV shows in the blood. The rapid
progression of HIV disease in some
babies has also made scientists
conclude that this happens.
Having a high viral load and a low
CD4 make in utero transmission
more likely.
Having TB (tuberculosis) at the same
time also makes it more likely and
HIV makes in utero transmission of
TB more likely.
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in utero is within the uterus or womb before the start of
labour.
Intrapartum means occurring during delivery (labour or child
birth).
Placenta is a temporary organ that develops in pregnancy
and joins the mother and foetus. The placenta acts as a
filter. It transfers oxygen and nutrients from the mother to the
foetus, and takes away carbon dioxide and waste products.
The placenta is full of blood vessels. The placenta is expelled
from the mother’s body after the baby is born and it is no
longer needed. It is sometimes called the afterbirth.
Foetoplacental circulation is the blood supply in the foetus
and placenta.
Foetal membranes are the membranes surrounding the
foetus.
Maternal-foetal microtransfusions are when small amounts
of infected blood from the mother leak from the placenta to
the baby during labour (or other disruption of the placenta).
Chorioamnionitis is inflammation of the chorion and
the amnion, the membranes that surround the foetus.
Chorioamnionitis is usually caused by a bacterial infection.
Mucosal lining is the moist, inner lining of some organs
and body cavities (such as the nose, mouth, vagina, lungs,
and stomach). Glands in the mucosa make mucous, a thick,
slippery fluid. A mucosal lining is also called a mucous
membrane.
Gastrointestinal (GI) tract is the tube that runs from the
mouth to the anus and where we digest our food. The
gastrointestinal tract begins with the mouth and then becomes
the oesophagus (food pipe), stomach, duodenum, small
intestine, large intestine (colon), rectum and, finally, the anus.
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It is also shown by the success
in preventing it happening. This
includes:
• Treatments that have reduced
transmission risk, even when
given only in labour
• Delivery of the baby by Caesarean
section, before labour starts.
During labour and delivery
(intrapartum transmission)
Transmission during labour and
delivery is thought to happen when
the baby comes into contact with
infected blood and genital secretions
from the mother as it passes through
the birth canal.
This could happen through ascending
infection from the vagina or cervix to
the foetal membranes and amniotic
fluid, and through absorption in the
digestive tract of the baby.
Alternatively, during contractions
in labour, maternal-foetal
microtransfusion may occur.
If it takes a long time to deliver
after the membranes have ruptured
(waters breaking) or if there is a long
labour, the risk of transmission in
women not receiving antiretrovirals is
increased.
A premature baby may be at higher
risk of HIV transmission than a full
term baby.
Breastfeeding
HIV in breast milk most likely gets
through the mucosal lining of the
gastrointestinal tract of infants.
• 50 percent of babies who turn out
to be infected test HIV negative in
the first few days of life.
The gastrointestinal tract of a young
baby is immature and more easily
penetrated than that of an adult. It
is unclear whether damage to the
intestinal tract of the baby, caused
by the early introduction of other
foods, particularly solid foods, could
increase the risk of infection.
• The way that the virus and the
immune system behave in some
newborn babies is similar to that
of adults when they first become
infected.
The most important thing to know
about vertical transmission is not how
it happens, but how we can prevent it
from happening. We can do this with
antiretrovirals.
Scientists know that transmission
occurs during delivery because:
• There is a rapid increase in the
rate of detection of HIV in babies
during the first week of life.
March 2013
In the UK all HIV positive women are
recommended to formula feed their
babies to protect them from HIV.
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Planning your pregnancy
Many HIV positive women become
pregnant when they already know
their HIV status. Many women are
also already taking ART when they
become pregnant. If you already
know that you are HIV positive, you
may have discussed the possibility
of becoming pregnant as part of
your routine HIV care—whether this
pregnancy was planned or not.
If you are planning to get pregnant,
your healthcare provider will advise
you to:
• Consider your general health.
• Have appropriate check ups.
• Treat any sexually transmitted
infections (STIs).
You should also make sure you
are receiving appropriate care and
treatment for your HIV.
It is reassuring that over 98 percent
of HIV positive pregnant women have
uninfected babies in the UK currently.
Choose a healthcare team and
maternity hospital that supports and
respects your decision to have a
baby.
In this section, as well as options
for HIV positive women (with either
negative or positive partners) wishing
to get pregnant, we look at safer
conception for HIV negative women
with HIV positive partners.
What to do when one partner is
HIV positive and the other is HIV
negative
Recently there has been good news
for couples in this situation.
In January 2013, BHIVA and the
Expert Advisory Group on AIDS
(EAGA) issued a position statement
on the use of ART by HIV positive
people to reduce HIV transmission.
The statement refers to a very large
study that in 2011 reported some
very important news. The results from
the HIV Prevention Trials Network
(HPTN) Study 052 provided proof
that ART can make HIV positive
people less infectious to their HIV
negative partners.
The study was conducted in several
countries with over 1700 couples
where one partner was HIV positive
and the other HIV negative. It
compared the effect of starting ART
immediately (CD4 count between 350
and 550) to delaying starting until the
positive partner reached a CD4 count
of less than 250.
The results showed that starting ART
at higher CD4 counts lowered the risk
of HIV transmission by a remarkable
96 percent. The study was stopped
early as the benefits were shown
more quickly than anticipated in the
original design.
The BHIVA/EAGA statement notes
that successful ART use by the HIV
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positive person is as effective as
consistent condom use in limiting
transmission.
when the positive partner had an
undetectable viral load. This review
included results from HPTN 052
an also found a minimum risk of
transmission.
Importantly, it stresses that this is
provided the following conditions are
met:
• Neither partner has another STI.
• The HIV positive partner has a
viral load below 50 copies/mL for
over 6 months.
• The HIV positive partner has
regular viral load testing (3-4
monthly).
Health care professionals in the
UK are recommended to discuss
the impact of ART on transmission
with HIV positive people and the
possibility of starting ART for this
purpose.
You can find the position statement
on the Department of Health website
at:
https://www.wp.dh.gov.uk/
publications/files/2013/01/BHIVAEAGA-Position-statement-on-theuse-of-antiretroviral-therapy-toreduce-HIV-transmission-final.pdf
For many people these developments
are very reassuring, particularly those
who meet the ART and viral load
conditions and choose to have sex
without condoms.
Couples who generally use
condoms will be advised that the
recommended way of conception
is by timed intercourse when the
woman is most fertile. Sometimes
the negative partner will be
recommended to take PrEP.
Occasionally some couples might still
be anxious about transmission with
unprotected intercourse even though
they meet the ART, adherence and
viral load conditions. Or they might
not meet the conditions. In these
cases they might be recommended
and consider other methods.
Also in January 2013 a systematic
review (when all the published
research on a topic is looked at
all together in order to answer
a question) was presented of
publications reporting rates of HIV
transmission in heterosexual couples,
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Timing of conception attempt
Ovulation – the most fertile time during a woman’s menstrual
cycle is when a mature egg is released from her ovary. The
egg has a life span of about 24 hours. Conception is most
likely to take place at this time.
Ovulation takes place about 14 days before the beginning of
the woman’s next menstrual cycle.
You are at your most fertile time the day before and the day
of ovulation as the egg survives about 24 hours. This is when
conception can take place.
The fertile period is usually about 5 days before ovulation (as
sperm can survive in your body for several days) until about
2 days after ovulation. So the period that a woman is fertile is
about 7 days.
There are different ways to estimate your fertile time, usually
by taking your temperature (which increases at the beginning
of ovulation), or by recording when you have your periods, in
order to work out when you are ovulating (called the calendar
method). Chemists sell ovulatory kits that can help you work
this out.
Your healthcare team can explain to you how to do this.
Pre-exposure Prophylaxis (PrEP)
This is when an HIV negative person takes antiretrovirals to
prevent them from getting HIV. This method is sometimes
recommended to help make a conception safer.
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When the woman is HIV negative
and the man is HIV positive
When the man is HIV positive with
a negative partner, it is possible to
use a process called sperm washing.
This involves the man giving a semen
sample to a clinic.
HIV transmission is concerned, but
it also means you will be conceiving
your baby in a very medicalised
environment. Many people find this
difficult, especially if it does not lead
to a successful pregnancy.
A special machine then spins this
sample to separate the sperm cells
from the seminal fluid. (Only the
seminal fluid contains HIV; sperm
cells themselves do not carry HIV).
The washed sperm is then tested for
HIV.
Finally, a catheter is used to inject
the sperm into the woman’s uterus.
In vitro fertilisation (IVF) may also be
used, especially if the man has a low
sperm count.
There have been no cases of HIV
transmission to women from sperm
washing.
Very few clinics offer this service in
the UK but the clinic with the most
experience is the Chelsea and
Westminster Hospital in London. The
Chelsea and Westminster assisted
conception unit can be contacted
on 0208 746 8585. It is not always
possible to obtain this procedure on
the NHS.
Apart from the costs, one of the
disadvantages of sperm washing
is that is does not have a very
high success rate for conception,
compared to conceiving by having
sex. It is very safe in far as preventing
March 2013
As the information about safe
conception protected by ART makes
it more acceptable for couples to use
this method of conception, sperm
washing is being recommended and
used less and less.
Of note the National Institute of
Clinical Excellence (NICE) 201
draft fertility guidelines include a
section on viral transmission with the
question: “What is the effectiveness
and safety of sperm washing to
reduce the risk of viral transmission?”
It specifically looks at transmission
risk of HIV when HIV positive male
partners are on treatment.
It concludes that generally
recommendations should be ARTprotected intercourse. Where these
conditions are not met couples
would still be advised to have sperm
washing. It acknowledges that
there might be some couples who
would still request sperm washing,
despite the HIV positive man being
adherent on ART with a viral load of
less than 50 copies/mL. For this they
recommend that the request should
be considered.
In situations where ART is being
used and viral load is undetectable
the guidance explains that sperm
washing only reduces viral load
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rather than eliminating it, so there
would be little or no added benefit
from this option.
When both partners are HIV
positive
The guidance is here:
http://www.nice.org.uk/nicemedia/
live/14078/62770/62770.pdf
When the woman is HIV positive
and the man is HIV negative
The options are much simpler and
cheaper in this situation. Do-ityourself artificial insemination (self
insemination) using a plastic syringe
carries no risk to the man.
This is a very safe way to protect the
man from HIV.
Around the time of ovulation, you
need to put the sperm of your partner
as high as possible into your vagina.
Ovulation takes place in the middle of
your cycle, about 14 days before your
period.
Different clinics may recommend
different methods. One way is to have
intercourse with a spermicide-free
condom. Another is for your partner
to ejaculate into a container. In both
cases, you then insert the sperm into
your vagina with a syringe.
For couples in which both partners
are HIV positive, some doctors, in
some cases, still recommend sex
with condoms to limit the possibility
of re-infection with a different strain of
HIV (or a resistant strain).
Re-infection is only a risk if one
partner has extensive drug resistance
and a detectable viral load, or neither
partner is on ART. This should be
the only reason that a couple in this
situation should be discouraged to
attempt to conceive naturally.
All these options involve very
personal decisions. Knowing and
judging the level of risk is also very
individual. All methods of becoming
pregnant carry varying degrees of
risk, and chance of success (and
sperm washing and fertility treatment
may involve a cost if you are unable
to access them on the NHS).
If you are planning a pregnancy, take
the time to talk about these options
with your partner. This way you can
make decisions that you both are
happy with.
Your clinic can provide the container
and syringe. They can also give
detailed instructions on how to do
this, including advice on timing
the process to coincide with your
ovulation.
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Can I get help if I am having
difficulty conceiving?
Is fertility treatment available to
HIV positive people?
All couples could experience some
fertility difficulties, regardless of
who is HIV positive or if both are.
Yes. Fertility is important when trying
for a baby whether or not you are HIV
positive.
There are things you can do, though,
which have all had some success.
But sometimes they are not as easy
as they sound.
The same fertility support services
should be provided for HIV positive
people as for HIV negative people.
If you have fertility problems, ask your
doctor about assisted reproduction.
Ask about the possibility of referral to
a fertility clinic with experience of HIV.
There will also be the same
levels (which can be quite strict)
of screening given to you as any
couple accessing fertility treatment.
Sometimes this will not be available
on the NHS.
You may encounter resistance to this
help because you are HIV positive.
You can and should complain about
this if you do.
You may want to choose a clinic that
is more sympathetic, or perhaps a
clinic that has more experience with
HIV positive parents.
March 2013
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I am HIV positive. My partner is HIV
negative.
We have two beautiful daughters. Both
conceived naturally. Both, like their mum,
are HIV negative
We initially considered sperm washing,
but we would have needed to use
artificial insemination. This was extremely
expensive and involved travelling and
giving my partner hormone injections.
This was not the way we wanted to have a
baby.
We decided that the risk of transmission
with someone who was undetectable for
many years, extremely adherent and had
no STIs was very low.
So we bought a cheap ovulation test and
did it naturally... and it worked... twice!
Mauro, Italy
24
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I have lived with HIV for so long that I don’t
remember what it’s like to live without it. I found it
difficult to be HIV positive in the beginning. But once
I learned to live with it, I decided to start living my
life again.
I then realised I could do all the things that I thought
HIV made impossible. I though I could not live over
25 years, or ever have a successful relationship or
have children!
So last year I told my partner, who is HIV-negative,
that I would love to have a child and he agreed.
We talked about how to achieve this and
the possible options. We settled on the least
complicated option – unprotected sex during my
ovulation period. In a couple of months, I conceived!
My pregnancy was relatively easy. My obstetrician
strongly advised that I go for a vaginal delivery
as my CD4 was very good and my viral load
undetectable.
My baby was tested for HIV a day after he was
born. He has now had several negative results. He
is now 6 months old and growing beautifully.
My partner remains HIV negative.
Millie, Bristol
March 2013
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HIV, pregnancy & women’s health
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HIV care and treatment during pregnancy
What is prenatal care?
Prenatal care is also called antenatal
care. This covers all the extra
care that you receive during your
pregnancy in preparation for your
baby’s birth.
Prenatal care is not only about
medicine and about tests. It includes
counselling and providing information
like this guide. It also includes advice
on your general health such as taking
exercise and stopping smoking.
As with all aspects of HIV care, it is
very important that members of your
healthcare team have had specialist
experience with HIV positive women.
This includes your obstetrician,
midwife, paediatrician and other
support staff.
Some HIV positive women with
CD4 counts above 350 might have
started ART to protect their negative
partners.
So some women will already be on
ART when they become pregnant.
Some women with higher CD4 counts
will receive a short course of ART
during pregnancy, to prevent vertical
transmission.
Treatment recommendations for
pregnant women can be slightly
different than those for other HIV
positive adults.
Usually it is best once you start HIV
treatment, to continue for the rest of
your life. In some circumstances in
pregnancy women use treatment just
until delivery, then they stop.
It is also important that the people
responsible for providing your
care understand the most recent
developments in preventing vertical
transmission and in HIV treatment.
What if I am already using
HIV treatment when I become
pregnant?
Does every HIV positive woman
need to use treatment in
pregnancy?
Many women decide to have a baby
when they are already on ART.
This speaks volumes about the
tremendous advances made with
these drugs.
Everyone with a CD4 count of 350 or
less needs to start ART. As do some
people with higher CD4 counts but
HIV-related health reasons (like an
opportunistic infection or hepatitis
coinfection).
Women feel better. They are
healthier. They are thinking about
long-term relationships. They are
thinking about a future and possibly
a family.
It is now increasingly common for
26
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women who conceive while they are
on treatment to continue on treatment
throughout their pregnancy.
There are two main reasons for
delaying treatment.
Studies have not shown any
increased risk to the mother or baby
from using continuous treatment
throughout the pregnancy.
BHIVA guidelines recommend that
women conceiving on an effective
ART regimen should continue this.
What if I need treatment for my
own HIV?
All HIV positive people with CD4
counts of 350 and below should be
on ART, including pregnant women.
Women needing ART for their own
health should start ART as soon as
possible.
If you are diagnosed early on in your
pregnancy, you might delay starting
treatment until the end of the first
trimester.
This is the first 12 to 14 weeks from
your last missed period. You might
also want to delay treatment over
this period if you already know your
HIV status but have not yet started
treatment.
The first is that the baby’s main
organs develop in the first 12
weeks in the womb. This is called
organogenesis. During this time a
baby might be vulnerable to negative
effects from any medicines, including
antiretroviral drugs. Although for
antiretrovirals there is increasing data
to show that these medicines are
generally quite safe.
A second reason to delay treatment
is that some women will experience
nausea or “morning sickness” in the
early stage of pregnancy. This is very
normal.
Symptoms of morning sickness are
very similar to the nausea that can
occur when starting ART. This can
also make adherence harder. If you
have morning sickness you might
delay starting treatment until after the
first trimester.
All women should have started ART
by 24 weeks of pregnancy. This will
mean you have the have time to
get your viral load to undetectable.
That way you have the least risk of
transmission and you will be able to
have a vaginal birth.
If you are diagnosed at 28 weeks
or after you will need to start ART
straight away.
March 2013
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If your CD4 count is very low and
your viral load high and/or you have
an opportunistic infection, or you are
diagnosed late in pregnancy, ART
should not be delayed.
viral load at delivery or abnormalities
in the babies for women who
received non-AZT ART.
What drugs will I start with if I’m in
this situation?
The third drug for women in this
situation will usually be an NNRTI
(efavirenz or nevirapine) or a ritonavir
boosted PI.
ART usually consists of a two drugs
called nucleoside or nucleotide
reverse-transcriptase inhibitors
(NRTI) as a backbone, plus a third
one, which is either a non-nucleoside
reverse-transcriptase inhibitor
(NNRTI) or a boosted protease
inhibitor (PI).
Nevirapine has been used widely
in pregnancy but there is a caution
against starting nevirapine-based
ART for women with CD4 counts
above 250. This is because of a risk
of liver (hepatic) toxicity. It is only
recommended for women with lower
CD4 counts.
i-Base has a guide, Introduction
to Combination Therapy that you
could use to find out more about
antiretrovirals:
http://i-base.info/guides/starting
The AZT and 3TC (Combivir) NRTI
backbone has been used the most
(so has the most information about it)
in pregnancy, so some doctors prefer
to recommend this. But tenofovir and
FTC (Truvada), and ABC and 3TC
(Kivexa) are now more widely used
in pregnancy, and are also good
options.
A European study (including data
from the UK) looked at use of
non-AZT ART in pregnant women
between 2009 and 2009. About 60
percent of women received this in the
study. There were no greater rates of
vertical transmission, undetectable
28
Efavirenz was not previously
recommended in pregnancy because
the drug caused neural tube (the
developing brain) damage to a foetus
in a single animal study. Efavirenz
has now been used and studied a lot
in pregnancy and does not appear
to be more risky than any other
antiretroviral in humans. BHIVA and
several other guidelines recommend
it in pregnancy.
Recommended boosted PIs are
lopinavir (boosted lopinavir is
called Kaletra and in one pill) and
atazanavir.
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What if I do not need treatment for
my own HIV?
transmission to their baby in 2009 to
2010.
ART is not generally recommended
at much higher than 350 CD4 unless
you have HIV-related health problems
or want to use treatment to protect
your negative partner.
If you do not need treatment for you
own health you will still need to take
antiretrovirals to prevent transmission
to the baby. You will also need to start
by 24 weeks of pregnancy or as soon
as possible after that.
The recommended NRTI backbones
are the same as for women who need
treatment for their own HIV.
The third drug will probably be a
boosted PI. A PI has an advantage
over an NNRTI if you plan to stop
ART straight after your baby is born.
Your body processes PIs relatively
quickly. You can stop all the drugs in
your ART combination with a low risk
of resistance.
For women with a viral load of less
than 100, 000 copies/mL before
treatment a third NRTI, abacavir, is
sometimes recommended, instead of
a PI.
Occasionally, a woman with a very
low viral load (less than 10,000
copies/mL), not on treatment, might
choose to use a short course of AZT
alone (monotherapy) with a planned
Caesarean section. This strategy is
being used less and less in the UK.
Only about 2 percent of HIV positive
women chose this way of preventing
March 2013
A very small proportion of HIV
positive people, known as elite
controllers, have undetectable viral
loads less than 50 copies/mL for
years without treatment. This is very
rare, only about 1-in-300 HIV positive
people are elite controllers. Pregnant
elite controllers could either use
AZT monotherapy or a 3-drug ART
regimen including abacavir, 3TC and
AZT.
What if I only discover I am HIV
positive late in pregnancy?
Diagnosis after 28 weeks of
pregnancy, before labour starts, is
happening less and less frequently
since HIV screening for all pregnant
women was introduced in the UK.
But if this happens to you, there is
plenty that can be done to help you
have a negative baby.
As viral load testing can now be
turned around quickly, some women
will still be able to have a vaginal birth
(if they start ART immediately and get
an undetectable viral load in time).
If a woman’s viral load is unknown
when she starts treatment or above
100,000 copies/mL, a fourth drug, an
integrase inhibitor called raltegravir,
might be added to the three-drug
ART regimen.
Raltegravir drives the viral load down
to undetectable levels very quickly.
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HIV, pregnancy & women’s health
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What about if my HIV status is only
discovered when I am in labour?
Can I carry on taking ART after a
short course to prevent vertical
transmission?
Even at this late stage there are
things that can be done.
A woman in this situation will be
given a single dose of nevirapine
immediately. There will probably not
be time to do a CD4 test but even at
higher CD4 counts there are no risks
to the mother’s liver with a single
dose alone. ART of 3TC and AZT in a
single pill and raltegravir should also
be given straight away.
Both nevirapine and raltegravir cross
the placenta very rapidly.
Intravenous (by injection into a vein)
AZT throughout labour and delivery
might be added as well.
If the mother goes into labour
prematurely she might be also given
a double dose of tenofovir. This is
because preterm babies are not able
to absorb medicines very well when
they are given them by mouth. Like
nevirapine and raltegravir, tenofovir
crosses the placenta very quickly.
30
If you had a CD4 count between 350
and 500 before you started and you
have no other reason to continue
treatment you could decide to either
stop or continue your ART. If you
are doing well, not experiencing
unmanageable side effects and are
adherent, continuing might be a good
choice. If you haven’t found taking
ART very easy in pregnancy and are
not sure if you can be adherent at
the moment then it might be better to
stop.
You can discuss the advantages and
disadvantages with your healthcare
team.
If your CD4 was above 500 before
you started you will usually stop ART,
unless you wish to continue to take
it protect your partner or there is a
health related reason to carry on.
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Are any antiretrovirals not
recommended in pregnancy?
Should I expect more side effects
when I am pregnant?
The liquid formulation of amprenavir,
a less commonly used PI, is also not
recommended in pregnancy (or for
children under four). This is because
pregnant women and young children
are unable to break down one of its
components called propylene glycol.
The capsule form of amprenavir does
not contain propylene glycol.
Approximately 80 percent of all
pregnant women using ART will
experience some sort of side effects
with these drugs. This is similar to
the percentage of people using HIV
treatment who are not pregnant.
The NRTI ddI is not recommended
in pregnancy. There may be a small
increased risk of birth defects with
this drug. Also there is a mild possible
increase with the PI nelfinavir. These
drugs are rarely used in the UK now.
There is also a strong warning to
avoid using the NRTIs ddI and d4T
together in pregnancy. There have
been several reports of deaths in
pregnancy in women using both
these drugs together.
d4T (stavudine) is no longer
recommended in the UK, except as a
last resort.
Nevirapine is not recommended
for women with higher CD4 counts
(above 250).
Most side effects are minor and
include nausea, headache, feeling
tired and diarrhoea. Sometimes, but
more rarely, they can be very serious.
i-Base have produced a guide HIV
and Your Quality of Life, which
includes managing side effects.
http://i-base.info/guides/side
One big advantage of being pregnant
is the thorough monitoring at regular
clinic visits. This will make it easier
to discuss any side effects with your
doctor.
Some side effects of antiretrovirals
are very similar to the changes in
your body during pregnancy, such
as morning sickness. This can make
it harder to tell whether treatment or
pregnancy is the cause.
Many antiretrovirals can cause
nausea and vomiting.
This is more common when you
first begin taking them. If you are
pregnant, though, such side effects
can present extra problems with
morning sickness and adherence.
March 2013
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Tips to reduce nausea, and help with
adherence are included on page 46.
factor for raised levels of lactic acid.
If your morning sickness is bad your
doctor may prescribe anti nausea
drugs (antiemetics), which are safe to
use in pregnancy.
You may feel more tired than usual.
Again, this is to be expected,
especially if you are starting ART and
pregnant at the same time. Anaemia
(low red blood cells) can cause
tiredness. It is a very common side
effect of both AZT and pregnancy. A
simple blood test checks for this. If
you have anaemia you may need to
take iron supplements.
Your liver normally regulates
this. Lactic acidosis is a rare but
dangerous and potentially fatal side
effect of nucleoside analogues.
Using d4T and ddI together in
pregnancy appears to be particularly
risky for lactic acidosis.
This combination is now not
recommended in the UK.
Consequently the risk of lactic
acidosis is now extremely low.
All pregnant women are at risk
of developing a high blood sugar
(hyperglycemia) and diabetes during
pregnancy.
Women taking PIs in pregnancy may
have a higher risk of this common
complication. So, you should be sure
to have your glucose levels closely
monitored and be screened for
diabetes during pregnancy. This is
routine for all pregnant women.
Outside of pregnancy, PIs have been
associated with increased levels of
bilirubin.
While this is usually a measure of the
health of your liver this is not always
the case as with the PI atazanavir.
Here bilirubin levels can be very high
but without causing any problems.
Pregnancy may be an additional risk
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Screening and monitoring
Will I need extra tests and
monitoring?
Both pregnancy and HIV care require
good monitoring.
HIV positive pregnant women do not
need any extra monitoring, as far as
HIV is concerned, compared to nonpregnant HIV positive women.
You will have a resistance test
before you start ART (unless you are
diagnosed very late). If you take a
short course and stop another one is
recommended then.
If you conceive on ART or do not
need ART for your own health, you
should have a minimum of one CD4
count before you start (or when you
first discover you are pregnant if
you are already on ART) and one at
delivery.
If you start ART in pregnancy you
should have a viral load test 2 to 4
weeks after starting, at least one
every trimester, at 36 weeks and
delivery.
Liver function tests should be done
when you start ART and then at each
antenatal visit.
If you do not achieve an undetectable
viral load by 36 weeks some doctors
March 2013
may recommend TDM (therapeutic
drug monitoring). TDM uses blood
tests to check whether you are
absorbing the correct amount of a
drug. Drug levels, particularly of PIs
can vary greatly between individuals
and can be lower during pregnancy.
Occasionally this can lead to a dose
adjustment.
Your doctor will also discuss your
adherence with you and perhaps do
another resistance test. You might
need an adjustment to your regimen.
In addition to your HIV care you will
be screened for hepatitis, syphilis and
other STIs, anaemia and tuberculosis
(TB).
You may also need to be
screened for toxoplasmosis and
cytomegalovirus (CMV). These are
two common infections that can
be transmitted to your baby. The
tests should be performed as early
as possible in your pregnancy.
You should be treated for these if
necessary.
Otherwise, tests will be fairly routine,
and may vary slightly from doctor to
doctor. Routine tests include blood
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pressure, weight, blood and urine
tests as well as foetal monitoring.
complex (MAC) and tuberculosis
(TB) infections are recommended if
necessary during pregnancy.
An invasive test is a procedure
or examination that needs the
body to be entered in some way,
either through a needle or with
a tube. If a test is invasive and
cannot be delayed until your viral
load is undetectable, you will be
recommended to start ART with
raltegravir in the combination. You
will also be given a single dose of
nevirapine 2 to 4 hours before the
procedure.
Prophylaxis against CMV,
candida infections, and invasive
fungal infections is not routinely
recommended because of drug
toxicity.
Treatment of very serious infections
should not be avoided because of
pregnancy.
Vaccine use while pregnant
Unless you need extra care you will
probably visit your clinic monthly for
most of your pregnancy and every
two weeks after the eighth month.
Pregnant women are at an increased
risk for flu and should be vaccinated
regardless of whether they are HIV
positive or negative. They should
be given the flu vaccine (containing
season and H1N1 vaccines).
Prevention and treatment
of other infections
Hepatitis A (HAV), hepatitis B (HBV)
and pneumococcal vaccines may be
used during pregnancy.
Opportunistic infection prevention
and treatment during pregnancy
Treatment and prophylaxis for
most opportunistic infections during
pregnancy is broadly similar to that
for non-pregnant adults. Only a few
drugs are not recommended.
You may need to be treated for
other infections, especially if you
are diagnosed with HIV during
pregnancy.
Prophylaxis and treatment of
pneumocystis jiroveci pneumonia
(PCP), mycobacterium avium
34
Live vaccines including measles,
mumps and rubella should not be
used during pregnancy.
Hepatitis B coinfection
If you have HBV you will need to
take an ART regimen that includes
tenofovir and either FTC or 3TC as
they act against HBV as well as HIV.
You will also be vaccinated against
HAV after the first trimester.
If your CD4 was less than 500
when you started ART you should
continue taking it after delivery. If it is
above 500 you might also consider
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continuing. If you do decide to stop
you will need to have your liver
function carefully monitored.
is damaged. If your HCV has not
progressed yet and your CD4 is
greater than 500 you could stop
ART unless you need it for another
reason. But if your liver is damaged
continuing ART is preferable.
If your liver is already damaged –
even if you are above 500 you should
continue ART.
Hepatitis C coinfection
If you are coinfected with hepatitis
C virus (HCV) and HIV—you
may discover this through routine
screening in pregnancy—there is a
risk of transmission of HCV of up to
15 percent. Treating your HIV will
reduce this risk of transmitting HCV.
You will need to take ART regardless
of your CD4 count.
Mothers with HCV should not be
treated with pegalated interferon or
ribarvirin. If you discover you are
pregnant while being treated with
these drugs, they should be stopped.
Your HCV will need to be carefully
monitored.
You will be vaccinated against HBV
and HAV.
If your HIV viral load is undetectable
on ART you can have a vaginal
delivery.
If your CD4 was 350 to 500 before
you started ART should continue
to take it after your baby is born
regardless of your liver damage
through HCV.
You should continue too if your
CD4 is less than 500 and your liver
March 2013
i-Base has a guide on Hepatitis C for
People Living with HIV.
http://i-base.info/guides/hepc
TB coinfection
It is important to treat TB in
pregnancy. Additionally HIV/
TB coinfection increases the risk
of vertical transmission of both
infections. TB can also increase the
risk of the less common in utero (in
the womb rather than during labour)
vertical transmission of HIV.
Like HIV, TB is a much greater risk
to a pregnant woman and her infant
than its treatment or prophylaxis.
Most TB first line TB drugs are safe
to use in pregnancy.
However, the TB drug streptomycin
is not recommended in pregnancy as
it can cause permanent deafness in
the baby.
This drug is now only rarely used in
the treatment of TB in the UK.
Treating recurrent genital herpes
during pregnancy
Many women with HIV also have
genital herpes. HIV positive mothers
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Delivering your baby
Can I have a vaginal delivery?
BHIVA guidelines recommend that
mothers on ART with an undetectable
viral load at 36 weeks of pregnancy,
and no other complications, deliver
vaginally.
are far more likely to experience an
outbreak of herpes during labour than
negative mothers. To reduce this risk,
prophylaxis treatment for herpes with
acyclovir is often recommended.
Herpes is very easily transmitted from
mother to child. Even if someone
has a HIV viral load that is below
detection on combination therapy,
herpes sores contain high levels
of HIV. The herpes virus can also
be released from the sores during
labour. This will put the baby at
risk from neonatal herpes and at
increased risk of HIV.
Prophylaxis and treatment with
acyclovir is safe to use during
pregnancy.
36
Elite controllers can also deliver
vaginally.
The guidelines recommend that
decisions about the way you deliver
your baby – called mode of delivery –
are made at 36 weeks after a review
of your viral load results.
Can I have a vaginal birth if I have
had a Caesarean before?
If your viral load is undetectable, and
there are no other reasons to have
one, this can be carefully managed
by your healthcare team. In HIV
negative women, 70 percent of those
in this situation manage a vaginal
delivery.
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Why is a Caesarean sometimes recommended if you are HIV positive?
Caesarean section
Caesarean section is a procedure to deliver a baby that
involves making a cut through the abdominal wall to surgically
remove the infant from the uterus.
It is important to understand that if your HIV is well managed
and your viral load is below detection on ART, then the risk of
transmission with either mode of delivery is practically zero.
If you are receiving treatment and do choose to have a
vaginal birth there is still a possibility that you may need to
have an emergency Caesarean section for obstetric reasons.
This can also happen to any woman having a vaginal delivery
whether she is HIV positive or negative.
Healthcare teams will be a bit more cautious with an HIV
positive woman than an HIV negative woman with vaginal
delivery.
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Why is a Caesarean sometimes
recommended if you are HIV
positive?
If you do not need treatment for
your own health and choose to use
AZT alone, a planned Caesarean
section will be necessary to reduce
transmission risk to minimal levels.
Several early studies showed
that planned Caesarean section
significantly reduced vertical
transmission compared to vaginal
birth. But these studies were before
ART and viral load testing were
routinely used.
For mothers on ART with an
undetectable load, having a planned
Caesraean section does not offer any
extra benefit (unless she needs one
for another reason).
If you do have a planned Caesarean
section, the operation must be
carried out before the onset of labour
and ruptured membranes. This is
also called “pre-labour” “elective” or
“scheduled” Caesarean section.
When should I have a planned
Caesarean section?
If your viral load is between 50
and 399 copies/mL at 36 weeks
you should consider a planned
Caesarean section. Your doctor
will discuss your most recent and
previous viral load results, how
long you have been on treatment
and your adherence with you. Your
own preference is important in this
decision.
If the planned Caesarean section
is to prevent vertical transmission
(and not for another reason) you will
need to have at 38 to 39 weeks of
pregnancy.
What if my waters break before my
planned Caesarean section?
If your waters break before your
planned Caesarean section is due
and your viral load is 50 to 999
copies/mL your medical team will
consider an emergency Caesarean
section. If it is above 1000 copies/mL
you will be strongly recommended to
have one.
Will a Caesarean section now stop
me having a vaginal in the future?
If you have a Caesarean section now,
having a vaginal birth in the future is
more complicated.
This is important to know if you plan
to have more children in a country
where planned Caesarean section is
not possible, safe or easily available
and there is less access to obstetric
care.
If your viral load is above 400 copies/
mL, a planned Caesarean section is
recommended.
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What else do I need to remember for the birth?
Many books on pregnancy recommend that you pack a bag or
small suitcase in advance. This is especially important if you
choose a natural, unscheduled delivery.
Include pyjamas or something to wear in hospital, a
toothbrush, wash bag—and of course your antiretrovirals.
Remember to bring them with you even if you are not sure
that you are in labour.
It is important that you remember to take all your drugs
on time as usual, including the day of delivery or planned
Caesarean section. This is a critically important time to make
sure that you don’t miss any doses.
Remembering to do so can be difficult with everything going
on, particularly if you are waiting for a long time.
Make sure that your partner or friend and healthcare team
know your medication schedule, where you keep your
medication, and feel comfortable helping you to remember to
take your pills on time.
HIV drugs and the baby’s health
In the past particularly, some mothers
and doctors have been reluctant to
use or to prescribe antiretrovirals
during pregnancy. This is out of
concern for unknown effects to the
baby.
All children born to HIV positive
women in the UK (and many other
countries) are also being monitored.
This close monitoring will provide
important safety information in the
future.
It is difficult to know if there are any
long-term effects.
Ultimately, it seems clear that
the biggest risk to a baby born to
a mother with HIV is HIV itself.
Antiretrovirals can prevent this.
Careful follow-up of children exposed
to AZT has not shown any differences
compared with other children.
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Will antiretrovirals affect the baby?
Can antiretrovirals cause birth
defects?
These concerns are justifiable.
Unfortunately there are no definite
answers, but the available evidence
so far shows that the drugs appear to
be safe.
Some reports have looked at the
risk of prematurity, birth defects and
toxicity in babies.
Prematurity
Several studies show a greater risk
of prematurity (baby born at less
than 37 weeks) and low birth weight
for babies born to mothers taking
ART with three or more drugs and
particularly with PIs.
A British study found an overall rate
of 13 percent (normally the rate here
is about 6 to 8 percent).
This should not be a reason for
a mother to avoid treatment in
pregnancy, particularly if she needs
it for her own health. It is important
to be aware of the risks and options
though, discuss them with your
healthcare team and make sure that
you are receiving the best possible
treatment, care and monitoring
for yourself and your baby in your
situation.
There have been very few reports
of birth defects in babies whose
mothers have taken these drugs in
pregnancy. The only caution at the
moment is possibly with the two
drugs ddI and nelfinavir, neither of
which is recommended in the UK.
What about anaemia?
Anaemia has been seen in babies
born to mothers on antiretrovirals
but this passes quickly and rarely
requires a transfusion.
What about bilirubin?
The levels of bilirubin in the baby
may also be higher than normal with
atazanavir and your healthcare team
will follow your baby’s bilirubin levels
very carefully and may give the baby
phototherapy to reduce the levels of
bilirubin.
Although extremely high levels
of bilirubin may damage a baby’s
developing brain there have not been
any reports of this occurring with
atazanavir.
Will my baby be monitored for
these symptoms?
Yes. Babies born to HIV positive
mothers on treatment will be
monitored very carefully.
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After the baby is born
the usual antibody tests are used.
What will I need to consider for my
own health?
Adherence! This means taking your
drugs exactly as prescribed.
Your own adherence to your ART
after the baby is born is critical.
Many women have excellent
adherence during their pregnancy.
After the baby is born, however, it is
easy to forget your own health.
This is hardly surprising. Having a
new baby can be a huge shock and
is always unsettling. Your routines
will change and you are unlikely
to get enough sleep. In serious
cases, women can have postnatal
depression.
You will need lots of extra support
from your family, friends and
healthcare team. You may also find a
community group very helpful.
Many mothers find the best way
to remember to take their own
medication is if they link it to the
dosing schedule of their new baby.
So if your baby has two doses a day
and you have two doses, make sure
that they are taken at the same time.
How and when will I know that my
baby is HIV negative?
Babies born to HIV positive mothers
will always test HIV positive at first if
March 2013
This is because they share their
mum’s antibodies. If your baby is not
infected with HIV these will gradually
disappear. This can sometimes take
as long as 18 months.
The best test for HIV in babies is very
similar to a viral load test. Called an
HIV PCR DNA test, it looks for virus
in the baby’s blood rather than at
immune responses.
Good practice in the UK is to test
babies the day they are born, and
then when they are six weeks and
three months old.
If all these tests are negative, and
you are not breastfeeding your baby,
then your baby is not HIV positive.
You will also be told that your baby no
longer has your antibodies when he
or she is 18 months old. This exciting
milestone is called seroreversion.
To check the baby is HIV
negative
HIV PCR DNA – a polymerase
chain reaction (PCR) test is a
highly sensitive test that detects
tiny amounts of HIV DNA in blood
plasma.
The test will “amplify” or multiply
HIV DNA in the test tube so that it
can be more easily detected.
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Will my baby need to take
antiretrovirals after he or she is
born?
Your baby will need to take
antiretrovirals for four weeks following
his or her birth.
The most likely drug will be AZT,
which must be taken twice a day. In
a few cases your baby may be given
another drug or a combination of
antiretrovirals if you have a virus that
is resistant to AZT or if your baby was
born while you still have a detectable
viral load.
As we suggested earlier, try and
co-ordinate the baby’s antiretrovirals
with your own treatment schedule.
Will I need to use contraception
after the baby is born?
You will be given advice on
contraception after your baby is born.
It is possible that resuming or
beginning oral contraception will not
be recommended if you begin using
antiretrovirals in pregnancy.
This is because some antiretrovirals
can reduce the levels of some oral
contraceptives, which means they
would not be foolproof birth control.
Please make sure your doctor knows
about this and can advise you.
Feeding your baby
There is a risk of transmitting HIV
from mother-to-baby via breast milk.
HIV positive mothers living in wellresourced countries can easily
avoid this by using bottles and infant
formula milk.
Bottle-feeding and free formula
milk
Avoiding breastfeeding is currently
strongly recommended for all
HIV positive mothers in the UK,
regardless of their CD4, viral load or
treatment.
After doing all the right things during
pregnancy and delivery, you will not
want to risk your baby’s health now
by breastfeeding.
Mother to child transmission of HIV
is now very low in the UK. Alongside
using antiretrovirals in pregnancy
and a carefully managed delivery,
exclusive feeing with infant formula
milk has contributed to our excellent
low rates.
All HIV positive mothers in the UK
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should be supported to formula feed
their babies. This mean that, if you
cannot afford the formula, bottles and
sterilising equipment, these should be
provided by your hospital so that you
do not need to breastfeed. Schemes
vary from clinic to clinic.
higher transmission risk than if you
breastfeed exclusively.
Your midwife should discuss whether
you need this extra support as part
of your discharge package when you
leave the hospital with your baby.
Medical treatment and provision of
formula milk will be in confidence.
Please make sure that you take
advantage of this if you need to.
Can I breastfeed occasionally?
It is very strongly recommended that
you do not breastfeed occasionally.
In fact, several studies showed that
“mixed feeding” may carry an even
Sometimes people ask me why I
do not breastfeed
Sometimes mothers can be worried
that being seen to be bottle-feeding
will identify them as HIV positive.
It is up to you whether or not you tell
anyone that you are HIV positive.
If you do not wish to tell anyone that
you are breastfeeding because you
are positive, your doctor or midwife
can help you with reasons to explain
why you are bottle feeding.
For example, you can say you have
cracked nipples or that the milk didn’t
come, both of which are common.
You are NOT a bad mother if you
do not breastfeed.
How does the cost of formula milk for a year
compare to the cost of HIV treatment for life?
As an HIV positive mother, I would never put my
baby at even the slightest risk of contracting HIV
through my breast milk as I live in the UK where
I can access clean water and formula milk.
Mem, London
March 2013
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Breastfeeding
The World Health Organisation (WHO) infant feeding
guidelines for women in countries were replacement feeding
is not safe or available recommend that breastfeeding is safer
if the mother or the baby receives antiretrovirals.
BHIVA and the Children’s HIV Association (CHIVA)
recommend the complete avoidance of breast feeding for HIV
positive mothers, regardless of whether the mother is healthy,
has an undetectable viral load or on treatment.
The BHIVA/CHIVA position statement on infant feeding in the
UK can be accessed here:
http://www.bhiva.org/BHIVA-CHIVA- PositionStatement.aspx
Many community groups in the UK (including i-Base,
Positively UK and the UKCAB) also recommend complete
avoidance of breastfeeding for HIV positive mothers.
Further reading:
http://www.positivelyuk.org/policy.php
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Tips to help adherence
difficult dose times or when you go
out at night.
First of all, get all the information on
what you will need to do before you
start treatment:
If you have a mobile phone with a
calendar, you can set the calendar
to remind you to take your pills at the
same time everyday.
• How many tablets?
• How often do you need to take
them?
• How exact do you have to be with
timing?
• Are there food or storage
restrictions?
• Are there easier choices?
Divide up your day’s drugs each
morning and use a pillbox. Then you
can always check whether you have
missed a dose.
Take extra drugs if you go away for a
few days.
Keep a small supply where you may
need them in an emergency. For
example, in your car, at work or at a
friend’s.
Get friends to help you remember
March 2013
If you have a computer, you can set
the computer calendar to remind you
at the same time each day.
If you need an online calendar
service, like Google, you can set it to
remind you every day. Some online
calendars, including Google, can
sms you at the same time every day.
Ask people already on treatment
what they do. How well are they
managing?
Most treatment centres can arrange
for you to talk to someone who is
already taking the same treatment if
you think that would help.
Make sure that you contact your
hospital or clinic if you have serious
difficulties with side effects. Staff
members there can help and discuss
switching treatment if necessary.
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HIV, pregnancy & women’s health
Tips to help with morning sickness
or drug-associated nausea
• Eat smaller meals and snack
more frequently rather than eating
just a few larger meals.
• Try to eat more bland foods.
• Avoid foods that are spicy, greasy
or strong smelling.
• Leave some dry crackers by your
bed. Eat one or two before you
get up in the morning.
• Ginger can be helpful. It can be
used in capsule or as ginger root
powder. Fresh root ginger peeled
and steeped in hot water can help.
• If cooking smells bother you, then
open the windows while cooking.
• Keep the room well ventilated.
• Microwave meals prepare food
quickly and with minimum smells.
46
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They also help you eat a meal as
soon as you feel hungry. Getting
someone else to prepare your
meals can help.
• Don’t eat in a room that is stuffy or
that has lingering cooking smells.
• Eat meals at a table, rather
than lying down. Don’t lie down
immediately after eating.
• Try not to drink with your meal or
straight after. It is better to wait
an hour and then sip drinks. It is
important for pregnant women
not to become dehydrated though
so do remember to drink outside
mealtimes.
• Try eating cold rather than hot
food. Or let hot food cool well
before you eat it
• Peppermint can be helpful. It can
be taken in tea or in chewing gum.
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CD4 and viral load results
These blood tests are used to monitor your
health and your response to treatment.
and whether the treatment is working
effectively.
CD4 count - This blood test checks your
immune system
Even rough figures are useful from your
previous history and your doctor can provide
you with these.
CD4% - This is similar to the CD4 count but
is often more stable
Viral load - This test measures the amount
of HIV in a sample of blood. It is used to
decide when you need to start treatment,
Date
(month / year)
e.g july 07
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CD4
(cells/mm3)
CD4%
Viral load
234
14
180,000
The lowest CD4 count and highest viral load
results when you were first diagnosed and
before you started treatment are the most
important.
Other notes
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Antiretroviral treatment
Your choice of new and future drugs will
depend on the drugs you have used in the
past and the reason you stopped using
them.
Drug name and dose
e.g efavirenz 600 mg
48
It is important to know whether this was
because of resistance or side effects.
If you can’t remember exact details, even
rough dates are useful (ie taking AZT for 6
months in 2002 etc).
Date started Date stopped Reason
(month / year) (month/year)
Feb 03
Jan 04
Not sleeping
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Other notes
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Other notes
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Other notes
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Other notes
Further information
If you have questions after reading
this guide or would like to talk to
someone about treatment contact the
i-Base information service by phone
or email.
0808 800 6013
[email protected]
Full prescribing information on
individual HIV drugs and other
scientific documents are available in
most European languages from the
European Medicines Agency (EMA):
The following community sites
include information on new drugs,
and include updated reports from
HIV conferences.
www.i-Base.info
www.aidsinfonet.org
www.aidsmeds.com
www.natap.org
www.aidsmap.com
www.tpan.com
www.ema.europa.eu
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Feedback
Your feedback on this guide helps us develop new resources and improve this
resource. All comments are appreciated. Comments can be posted free to:
FREEPOST RSJY-BALK-HGYT, i-Base, 57 Great Suffolk Street, London SE1
0BB.
Or made directly online at:
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